2. WHAT IS ADVOCACY?
Advocacy- speaking
or writing in
support of
something
3. History of Advocacy
1900s 1960s 1970s 1980s 1990s 2000s 2010s
Suffrage Civil Rights AIDS
Women’s Movement
National Cancer Act
Cancer Advocacy Begins
Advocates join Cooperative Groups
Advocates join Peer Review
for DoD and others
FDA starts Patient
Consultant Program
Research Advocacy
Network formed
Adapted from Coalition of National Cancer Cooperative Groups Training Program
Advocate Handbook “Rules of the Road”
4.
5. HISTORY OF SUPPORTING CANCER RESEARCH
Susan G Komen for the Cure National Breast Cancer Coalition
Committed to ending breast Increased federal funding
cancer forever by energizing for breast cancer research
science to find the cures
Worked to establish the
Invested 1.9 Billion in cancer Dept of Defense(DOD)Breast
research
Cancer Research Program
Partnered or funded programs
• Advocate at the table when
in more than 50 countries
ever decisions are made
Provided more than $27
• Has provided $2.53 billion
million in funding for
since 1992
international breast cancer
research • $150 million in FY11
• 5,839 awards in FY92-09
6. RESEARCH ADVOCACY
Newest type of cancer advocacy
Primary goal is to interact with the research
community
Brings the patient voice to the research and a
sense of urgency to the process
Provides their skills, education, experiences and
most of all passion to research
7. PARTNERSHIP BETWEEN ADVOCATES AND RESEARCHERS
RAN has identified points along the research continuum
where advocates can make a difference by bringing the
patient perspective to the research process
Here are 4 examples from our work
Focus groups to provide questions important to patients
TAILORx trial
BRAF mutation brochure
Focus on Research Program
8. QUESTIONS IMPORTANT TO PATIENTS
Metastatic Breast Cancer Network
Not pink
Studied to get better treatments for early stage disease
5% of research dollars go to metastatic disease
Provided 10 questions
ECOG studies
E2108
Long-lived metastatic patients
Which patients benefit from which chemotherapies
9. DESIGN OF TAILORX TRIAL
Can the results of Oncotype DX be used to recommend treatment?
10,000 women
Conducted focus groups of patients and advocates
Did not change the question
Did change the design
All the patients received the test
Only the intermediate group randomized
10. BROCHURE EXPLAINING THE BRAF MUTATION
Contacted by Pharma to develop a brochure
Not drug specific
RAN owns the copyright
Developed a draft and tested it with patients
Delete information about the science
Provide benefits and risks
Revised and retested
11. RESEARCH DISSEMINATION AND FOCUS ON RESEARCH PROGRAM
Structured program to equip advocates to attend scientific
meetings and take the information reported at the meeting to a
patient constituency
Curriculum and preparatory webinars
Develop backgrounders
Network with other research advocates from different disease sites and
other organizations
Opportunities to discuss with researchers
Identify a “Research Dissemination Partner” in their community
Report back to class and patient constituency
12. ENGAGE THE ADVOCACY COMMUNITY
Develop true partnerships of community engagement
Patient-focused
Each partner gives and each partner gets
Outcomes
The science moves forward
The community is recognized
How advocates can help in a time of less resources
Bring the community perspective
Increase tissue awareness and donation
Comparative Effectiveness Research
13. “Never doubt that a small group of
thoughtful, committed citizens can
change the world. Indeed, it is the only
thing that ever has.”
Margaret Mead
www.researchadvocacy.org